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Wednesday, June 30, 2010

In my time browsing the online community, I often get asked about my story, what it’s like to be a late-diagnosed autistic and what I want people to know. This is rather odd, because I’m not in the habit of showing off my scars, but there are some things that I think that I can talk about.

I want to be very honest with you. I am an adult living on social assistance, in a shared accommodation run by a non-profit housing organization. Despite being highly educated, I find it difficult to find and maintain a job on my own, and I’m not even sure that I ever will. I struggle to survive with few to no supports, mostly my family and the little that some organizations have been able to provide. It is, at times, very and extremely hard. There is a lot to remember, and each minute, each second, costs me. It costs me strength and energy, to maintain social skills, to remember how to do things, process information and formulate answers. It takes a lot of work, as I’m sure most parents of autistic people can understand.

I am an autistic adult who was diagnosed with Asperger Syndrome when I was 17, in 2002. I wish I had known sooner, and that I knew as a child what I know now.

Maybe I wouldn’t have felt like a defective monster, or that I was too lazy and just needed to work harder for most of my life. Maybe it would have shielded me from the taunts of bullies, and helped to soothe the tears I cried into my pillow for nights on end. Maybe it would have helped me and the other children to better understand, so that maybe I wouldn’t be bearing the scars of social blunders. Maybe it would have mended my mother’s broken heart as she watched me desperately calling up every girl in my class, trying to get someone to play with me for a weekend a month away. Maybe my teachers wouldn’t have been so confused, and helped me more than the little ways they snuck into the classroom. Maybe I would have gotten better supports sooner, and would be more comfortable with accommodations, and more willing to ask for help when I’m in trouble. Maybe my parents would have understood me better, and would have been better prepared to help when I started coming home with meltdowns and severe panic attacks every day.

I could go on with all the "maybes" and "what ifs." But maybe just knowing, just having a diagnosis, would have made all the difference in my life. Or maybe it wouldn’t have. I can’t say for certain, the same way I cannot predict the future or outcome for any child, autistic or not.

What I do know is this; I do not want a single child to slip through the cracks and have to suffer being unsupported, through school and throughout life. I do not want them to suffer even a fraction of the damaged self-esteem, heart-broken pain, overwhelming confusion, exhaustion and self-loathing that I clawed through.

Once, I went to South Africa for a course, and met with anti-apartheid activists. To make a change, they told us, take up a cause that is personal. This is about as personal as I can get, that I share my experiences and advice from those experiences, so that others may learn. And so, I go out and try to find parents and caregivers who would welcome what I have to say, in order to make a change. Change, for a better future, not just for the next generation, and the present generation of autistic children, but for the entire autistic population including autistic adults.

I do not tell my story too often. It is very painful to relive it, and I am thankful that I can focus on using my experiences to think of positive applications to my knowledge.

I want you to understand, that from my point of view, I did not suffer from autism. That is, autism does not cause me pain. It creates struggles and challenges, yes, that can be disabling, but the pain and suffering that I went through happened because of two things: being undiagnosed and not having the knowledge for supports and accommodations.

In other words, I struggled because nobody knew exactly what I was struggling with, and because I did not have the words to describe my difficulties. For me, the rising autism rates represents a rising rate in awareness and knowledge and a hope that less and less children will be mis-, under- and un-diagnosed, until there is no child that slips through the cracks. With that hope, there is a chance to make a difference, to ensure that each child gets exactly what he or she needs and requires in order to succeed.

To me, each child is a unique person with unique strengths, weaknesses and needs. This is all children, and all people. We all grow up with different cultural backgrounds, with different parents and experiences, and become unique people. At the same time, one autistic individual will require unique supports, just as she or he has unique abilities.

I may not be able to speak on the behalf of the entire autistic population in terms of my beliefs and experiences, but I do my best to apply what I know to each situation I come across on the internet, to see whether I can be of any assistance, even if it is just to provide encouragement. By doing so, I hope that my feedback can provide support to parents and caregivers, who in turn support my fellow autistics.

As I do this, I hope that people remember the following:

Have understanding. Sometimes just knowing that we are having a hard time is enough. Be aware of what affects each of us and understand that we try very hard with what we have, even when we have nothing left. Even if it does not lead to supports and accommodations, just knowing and giving us a little more room to work can make a big difference.

Have patience. A lot of us can take longer than others to develop and learn things. But autism is a developmental disorder, not a delay. So we do develop and grow, but we need your help, and you need to keep your cool. It may take a saint’s level of patience, but we need someone stable that we can depend on, a steady hand to help guide us when life gets more confusing.

Be caring. More than anything, we are still your children and students. We are still people capable of feeling, of loving and being hurt. Make sure to not just be a service provider or educator. Be our friends, our family. Learn what we love, and use that to speak to us that you care. Learn how we can show you that we also care for you, and to look for how we communicate to you.

Be positive. This is really hard to do sometimes, with all the challenges that arise, but it’s very important. We tend to pick up our attitudes from those we’re around, either being over-sensitive or under-sensitive, and so your attitude becomes ours. With all the difficulties we face together, it’s very easy to be discouraged. Do what you can to keep a positive perspective on things.

And finally, be good to yourself. You and I are only human. We aren’t perfect. It’s okay if you make mistakes. Forgive yourself, and take the time to take care of yourself. If you need to, seek respite and take a day off. We all need personal time to rest and recharge. So when you feel yourself worn thin, don’t be afraid to reach out for help and take a break.

I don’t believe I am alone when I say I don’t expect you to be superhuman. Raising children and taking care of others can be very hard, and sometimes it’s hard to find help. But there are people who can help, and we want to be there for you.

I hope that my words reach people and provide help in some way. While I strive to make big changes, I believe that all that I’ve gone through and all that I work for is worth it if I can make even just one small change. Maybe that small change can make all the difference.

Tuesday, June 29, 2010

Can you remember developing photos, when you had no idea what you were going to get? We would turn in those little canisters and hope for something wonderful to come back in the envelope.

We used to spend a lot of money trying to get a good picture of our son. Capturing Jack on film required expert photography skills combined with the fastest shutter speed and endless rolls of film. It took money and patience and perseverance, and faith, and will, and cooperation and an ability to be spry that most people lose about the age of nine -- and we failed, continuously.

We don’t really have those “Kodak moments” in our family, and it’s not for lack of trying. We have been prolific in our clicking so as to produce at least some decent shots over the years, if only by the grace of statistics ... but we cannot truly capture our elusive boy. When we did get a shot, it was never with a straight-on look. It felt like I could never really look at my own son, not since he was an infant, when, as irony often deposits itself into my life, my son demanded constant eye contact or he would fuss and fuss; he was so intense, and I would just stare at him for hours.

At some point I gave up trying for a good photo. I couldn’t manage my disappointment. I would race to the store, hand over a wad of twenty-dollar bills and pick up packs of pictures after a weekend trek on the beach. Batch after batch I would comb through them in the car, seeing only the missed moments, or blurry ghosts of Jack, or his eyes, distant and turned away. I began to let go of the idea of ever having a “real” family photo. I stopped trying to take a picture of Jack doing normal every day activities and saved my strength for holiday photos, birthday parties. Worse, I would leave the camera at home completely, feigning forgetfulness, instead of trying to push down my sadness at every click.

I tried not to care that frames sat empty, a crushing reminder of my once-upon-a-time dream of handing grandparents a happy smiling print of their first grandson. Scrapbooking, while never my passion, was quickly abandoned. I wanted to not notice other families’ adorned tabletops and hallways, lined with home and school photos, each one a masterpiece, a moment in time framed and hung for all to see. Happy, smiling families on their holiday cards, a hundred of them landing in our mailbox in December, just kicked at my heart.

Then we got a digital camera, a nice one.

And we started all over again. Clicking and clicking, knowing that for every decent shot we might get we would need to delete 40 or 80 others. And after 5000+ digital images, we have figured out that it wasn’t just about the latest technology, or spending the most money, or getting leg cramps, or making sure Jack’s shirt was clean. There was something else preventing us from having a “perfect family photo.”

We have a child with autism.

Jack in the back yard 2006

Actually, we have a child with autism and cerebral palsy, and some panic issues and some migraine issues and some sleep issues and God only knows what else. And one of his “issues,” or skills, or (dis)abilities, is avoiding a camera lens, or at the very least he won’t tolerate a camera with a person behind it. The reason we had a hard time getting a good picture of Jack wasn’t really about us not trying hard enough, or not caring enough, it was just a part of having this special needs kid. Wanting Jack to look like a kid in those “beautiful family in white cotton sitting in a field” photos is like asking my son not to have autism.

When I saw a “bad” photo, I kept seeing him as the world might see him, or perhaps how he appears in an IEP or an IPP, or any other form that insists I list all of the reasons we are in a doctor’s waiting room instead of at the park. I was hurt and sad all over again, like getting a diagnosis with every frame. And then I realized we would never be able to “capture” Jack. He is the kind of kid who is surprising and variable and continuously changing. He is sneaky, or laughing at his sister, or gobbling half of a chocolate cake. He’s more than all of those disabilities that get in the way of a photograph; he’s my precious, hazel-eyed boy.

photo by www.mandymartynimages.com

Under all of those disabilities, he’s our child who is more like us than not. He has our sense of humor, and our love of fine food. He loves to bury himself in a pile of pillows, and snuggle with his family. He likes to sift the sand and watch the blues of Lake Tahoe shimmer in the sun. He is affectionate, and loves to watch Mythbusters with his Dad. He loves a good car trip, and he feels better, just like we do, when we walk along a trail in the midst of natural beauty. He’s ours, and he happens to have bunch of disabilities ... but he is our child first.

We take photos of each other, of events, because we want to mark a moment in time, believing that a single image can remind us of who we were, or who are children were at the time. Great photos capture the essence of the moment, distilling all of the emotions in the air and pasting them down into a flat image. And that’s where it’s hard to see Jack. His autism shows up just fine; he is clearly awkward, not a part of the crowd, he is not “cured," he “has a long way to go.” At a glance people can take in a child in a photo, “Oh, what a bright child,” “What a pretty little girl,” but it takes more than a glance to see Jack. He is in process, continuously moving. He is a child with cerebral palsy stumbling across a crowded room, who somehow manages to avoid prone babies and sick dogs, near missing a fragile elderly person. On the outside he is dirty hands and an unwiped nose, and badly cut hair because he won’t sit still, but inside, he’s the boy who gently grazes your arm to say “hello,” a micro-moment not even superhuman speed could capture through a lens. The camera has no patience to wait for Jack, but we know that all of who he really is, is there beneath, and if we are patient, if we stop expecting the 90 percent of what everyone has, we will see our 10 percent and all of its beauty, just as we must wait until the end of the sentence to hear the brilliance of the stutterer. And it is sometimes painful to be that patient.

****

And I’ll admit, I have not completely abandoned the idea of a family photo. We recently managed to get one that’s pretty decent. I’m lucky because my sister is a photographer, so she spent some time with us in her home studio a few weeks ago. Jack was amazing. He looked at the camera, he smiled, he sat still for moments at a time. He didn’t yell or try to escape. He was precious. We got several beautiful shots of him, photos that capture a bit of that sparkle in his eyes. And you know who was a terror during that photo shoot? His perfect little neuro-typical sister, of course.

Monday, June 28, 2010

When I was diagnosed with Asperger’s syndrome in 2003 at the age of 25, I had already pretty much given up hope of ever finding and getting a job that was right for me. All I had to show for my job skills was a high school diploma with a lousy grade average, and a few exams which I barely passed when I tried studying to become a school teacher and when I tried getting a bachelor degree in English at the university, neither of which I finished.

Apparently it is difficult for people with Asperger’s syndrome to get a job or keeping a job, which was exactly what I had experienced as well. Fortunately, it does not have to be like that. In fact, hiring "aspies" for certain niche jobs can be of a great mutual advantage both for the aspie and for the company hiring.

I started out in a 5-month trial period, where I was given assignments that were designed to expose my strengths and weaknesses regarding my work skills. Doing follow-ups on assignments was important and also discovering what sort of work environment was optimal for me. Personally I prefer to work in a room without any direct, bright light, and I don’t like to sit with my back towards a door or where people can look over my shoulder. These things make me really uncomfortable and distract me from my work.

After the trial period was over, the company offered me a job as an IT consultant on "flexi" time, which means I work 20 hours a week, 4 days a week, 5 hours a day, and get Wednesdays off. I get paid as if I had a normal full-time job: the company pays me for the 20 hours a week I actually work, and the local municipality pays the rest.

Our company's main niche area of expertise is software testing. We test programs and applications for use on the internet as well as software to be used in other industries, for example software for windmills and software for hospitals. Doing a methodical and structured test of a piece of software is something that fits right in with a lot of the strengths of most aspies. We are good at spotting even the most minor irregularity that could potentially be a fatal flaw in the software -- this is something I have experienced personally in my work, and that is when I know I have done a good job.

The downsides of hiring aspies: it requires a lot of patience on the employer’s behalf. But having been employed for over two years now, my experience tells me that it is worth the patience.

First thing is that aspies have a lower stress threshold, or we are worse at recognizing the warning signs of stress. This causes us to have a significantly higher number of sick days than most people, and usually this means the aspie gets fired. This is a big mistake for the employer. Let the aspie have a few days off to cool down again, then talk to him and find out what caused the meltdown. Chances are it has something to do with the work conditions not being optimal. In my experience, under optimal working conditions, an aspie will work harder, faster, and better than just about any "neurotypicals" or "NTs" out there, out of sheer loyalty and personal perfectionism.

Second thing is that potential clients tend to be rather skeptical when they hear that the employees are "disabled." It does not matter to them that the product they will be getting in return will generally be of a higher quality and usually will be finished quicker than if they got it somewhere else.

(However, our prices are on competitive market terms. This is not a charity company; our services are not cheap just because the employees are diagnosed with autism.)

But work can be scarce, and "quiet" periods can be extremely stressful for us, which leads back to the First thing.

At the company where I work, we have two main solutions for this situation. The first solution is a game room where the employees can go and play a game on a video game console (in our case a Nintendo Wii). The second solution is that the employer lets people go home early, no strings attached, no reduction in pay that day, just go home early, get some rest, and come back tomorrow. When this happens to me, I usually stay at the office until after lunch and then go home (because the lunch is pretty good at work compared to my miserably empty fridge at home).

I share an office with three other guys. I think it is important to be aware of who are put together in the same office. Obviously, if there is somebody in your office you have a bad problem with, that is not going to get very productive. On the other hand, if it is an aspie you get along with too well, you probably won’t get a lot of work done either. It is a delicate balance, but it can be done. The guy I get along with "too well" sits in the office next to mine. We talk during breaks, or if neither of us has anything better to do. The guys I share the office with and I talk more casually and maybe more often, but because we don't have as much in common, it is easier to focus on getting back to work.

The feeling I get when I go home from work, knowing that I have done a good job, made a difference, contributed to business life as a professional, and getting paid and recognized for my work, is incredible. I went from having no hope back in 2006, to recently starting to think about how to improve my career.

Having Asperger’s syndrome does not prevent us from getting jobs, in fact it can be an advantage and huge strength both to ourselves and to the employers. The future of aspie employment has never looked brighter than now, and I believe that this is still just the beginning.

Friday, June 25, 2010

If you spotted my six-year-old son on the playground or at recess, he wouldn’t stand out from the other kids. Like most boys this age, he loves playing any made-up game that involves running, shouting, fighting bad guys, fighting robots, or fighting bad guy-robots.

If you were to watch him, you might even be impressed at the way he’s able to invent elaborate imaginative play scenarios and enlist other kids -- kids he’s never even met -- to join in the story. “A born leader,” you might think. “What an imagination.” You might also be impressed by his sophisticated vocabulary, peppered with “suddenly” and “meanwhile” and “actually” and maybe an occasional “shall” substituted for “will” for extra flair. “Smart kid. Polite, too,” you think, as you watch him introduce himself to kids and adults and request their names with an Emily Post-ian correctness.

But if you hung around the playground for a while longer and watched carefully, you might see his confidence and exuberance shift to frustration. As the other children take the made up story in another direction, or no particular direction at all, he will run after them shouting, “Wait! Stop! Come back!” Red faced and neck veins popping, on the verge of tears: “You’re not LISTENING to me!” he accuses.

The other kids are simply tired of trying to remember which part of the blacktop is the lava and which part is the alligator swamp and just want to swing on the monkey bars. He might yank their arm, or even shove them aggressively when they ignore his directives.

Now you (okay, maybe not you, but someone) might have a different view: “Geez,” you might think. “Bossy as all get out, that kid. He’s out of control. Probably spoiled rotten at home.”

And if you hung around even a little longer, you’d see something else entirely. You might see my son all by himself, walking back and forth over a railroad tie, happily talking to no one in particular.

----

It’s not immediately obvious that my son is on the autism spectrum. Like so many people who sit, toes dangling, on a certain end of the spectrum he often “passes” for neurotypical or "NT."

Great, right?

Yeah, great. Except it’s not that simple.

When a child doesn’t show the obvious outward signs that have come to signify autism, and when that child is precociously verbal, obviously bright, and has a strong social urge, we often assume that the child doesn’t require specialized support. Behaviors that result from challenges with social interaction, language differences or sensory processing difficulties appear as plain old garden-variety bad behavior.

After all, he doesn’t look disabled. A kindergartner who reads at a third grade level, after all, should know better.

When we go to birthday parties or social events with families, I’ll find myself striking up a conversation with another parent I’ve never met or barely know. I go through a set of mental gymnastics to try and determine if I should “disclose” or not. The longer the conversation goes, the harder it is to engage honestly without saying something about my son being on the spectrum.

When I do, often the conversation continues easily without a blip.

But occasionally, when I say something about Asperger’s or autism, I’ve gotten an eye-rolling response that goes something like this:

“Oh, I just hate all those labels they give kids these days. Why do they have to turn every little problem into a psychological condition?”

The optimist in me wants to hear this as supportive (Let’s not pathologize differences!) but the paranoid, parent-on-the-defensive in me hears it as dismissive:

“There’s nothing really different about those kids that a swat on the behind wouldn’t cure.”

“They’re old enough to know how behave.”

“You’re just excusing bad behavior by giving it a fancy name.”

With these imagined judgments ringing in my ears, watching my son mix it up with a crowd of NT kids feels like watching him perform a high wire act. I scrutinize his steps watching for the tiny bobble or misstep. I run around underneath him with the net rather than gazing up and marveling at the amazing feat.

Will he fall? He almost fell. Oh, god, please don’t fall.

----

Let’s go back to that imaginary playground I was telling you about. What would you see if you -- or that generic someone -- were to watch me?

I might not be among the parents who are chatting with each other or enjoying their novel on the bench. You’d see me lurking somewhat close to the action. Occasionally, you might see me prompting my son to answer another child’s question or helping to interpret the what’s going on: “It looks like they’re changing the game. They want you to join.” And sometimes, I might interpret my son’s behavior for other children: “I don’t think he heard you. Can you ask him again?” or “I think he wants you to follow him.”

My son is at an age where having a lurking mom isn’t yet the ultimate un-cool stigma. But soon, my well-intentioned attempts to help him fit in -- to pass -- will only make it more difficult for him to do so.

So here I stand, on the playground, at the birthday party, taking the somewhat complicated position that, “My kid is just like yours. Except when he’s not.”

Wanting him to be “just one of the guys,” but hoping he’ll feel proud someday to claim his differences.

Wanting him to be independent, but hoping he’ll be able to get support when he needs it.

Wanting him to develop the skills he’ll need to do things that don’t come naturally, but hoping that he surrounds himself with people who let him know it’s okay when he can’t.

Thursday, June 24, 2010

"Autism is a Rainbow" is one of several autism metaphors used by the autism community. These metaphors shape thoughts and beliefs about autism, and influence the actions of individuals. Metaphors also impact family members who have autism, as how their family members view them can influence how they view themselves.

To appreciate autism metaphors' community influence, a definition of autism is necessary. Autism is a pervasive developmental disorder typically characterized by:

"Poor social interaction (this can include lack of eye contact, and social exchange, both verbal and non-verbal)

"Language delay (expressive language is equally important as receptive language; repetitive phrases and inability to initiate dialog or support it)

"Obsessive behavior (this can include inflexibility, repetitive physical movement and fixation on objects)."*

Autism Is a Rainbow

The rainbow is an object of beauty, something to be seen and appreciated. There is nothing wrong with a rainbow. The rainbow metaphor is often expressed in the thoughts, beliefs, and actions of those in the autism community. The spectrum of colors in a rainbow also represents the wide range of abilities of people with autism.

There are six areas the "Autism Is a Rainbow" metaphor influences:

Research

Day-to-day life

Future planning

Treatment or accommodation

Conversation topics

Organizations and groups

The types of research supported by those who subscribe to the "Autism Is a Rainbow" metaphor usually focus on treatments or technology that will enhance the live of people with autism, not “fix” them. Metaphorically, research by this group would develop a new window cleaner, so a person can look more clearly at the rainbow through the window. More literally, research might create a new communication device for a nonverbal person with autism, instead of trying to “fix” the person so that he or she can communicate verbally.

The focus of day-to-day life is often on the little and big achievements by those who have autism, and on the “good” side of autism. A rainbow comprises a spectrum of bright colors and people in this group often view the day-to-day activities as bright experiences. They do acknowledge hard times, but the main message is about the progress made by adults and children on the autism spectrum, with less focus on the dark side. Some members of this group refuse to speak about or listen to anyone or anything that sheds a negative light in any way on autism. One does have to acknowledge the difficulties of autism in order to find adaptations or supports, but it is also good not to dwell too long on the negative. In other words, stop to smell the roses but be wary of the thorns.

Parents and caretakers often discuss future planning in this group. The options discussed include trust funds (in case person is unable to work), ongoing support, therapies, and so forth so that the individual can function just as they are. Other areas of need include education and vocational skills training. Because a rainbow is complete, there is nothing to add to it, but very specific circumstances must come together so it can shine, and its innate beauty can be appreciated.

Since rainbows are to be admired as is, treatment philosophies focus on technology and devices that assist a person, and minimize or mitigate only the negative aspects of autism. To represent this metaphorically, a treatment could be considered wind. If wind were to blow, the rain clouds move on, and a rainbow appears. This is in contrast to a negative view of autism as a “rain cloud.” So the treatments would include awareness and self-advocacy so that individuals with autism can educate others about how terrific they find having autism is.

Conversations on social media websites reflect the rainbow metaphor as well. Rather than focusing on what is missing from peoples' lives, the conversations are about how those with autism feel and experience life, and about acceptance -- by those with autism, and from parents' perspectives. This is expressed in the metaphor by the “brightness” or positivity the rainbow represents. Since a rainbow is a thing to be admired, conversations in this group center around the admirable aspects of participating in the autism community.

Organizations exist for this group as well, such as ASAN (Autistic Self Advocacy Network). However well the rainbow represents this community, the rainbow is not often used as a logo or symbol of pride because of its association with a different community: Gay, Lesbian, Bisexual and Transgender (GLBT). Some have changed the colors slightly making them more pastel or a more saturated hue, but the logo usually contains another element to help limit any confusion.

Those with autism often miss metaphorical meanings but the impact of metaphorical conceptual thinking still affects them by affecting those around them. If a parent thinks of his or her child as a thing of beauty to behold, rather than a source of trouble and strife, the child will have a more positive view as well as more self-confidence.

Wednesday, June 23, 2010

Sensitivity and compassion can result from having kids with autism and social challenges included in regular education classrooms. It is also likely that there will be no choice other than inclusion, financially, in the future. Classrooms will have to accept differences (and I write this knowing that every child is "different"). How do we make inclusion positive for everyone involved?

I taught in a district autism spectrum inclusion project, have worked in speech for 25 yrs, and have a middle school child with PDD/ADHD. In my experience, what is important and overlooked is that regular education peers are not given good information. The teachers are trained (supposedly) as are the other staff, but the kids themselves are told little besides "Do unto others as you would have them do unto you."

It has been my observation that in kindergarten and early elementary school, most kids are either fairly supportive of an included classmate and may try to help them out in the classroom, or -- more often -- politely ignore them. But once they hit the last half of third grade, all children are aware when a classmate is significantly different.

One of the most helpful things I was able to do for my son and his classmates in an included setting (and for the other included peer in that same class) was to talk with them all about social, organizational, attentional, and sensory "challenges" and "how to handle this as a peer." Students were absolutely astounded and relieved to find that it would be okay, for example, to tell a socially challenged peer that they were tired of listening and now it would be their turn to speak. Yes! It's okay to be direct and spell out the rules for "social"! Please do! Kids need to know that included classmates are not "out of step on purpose!" Regular education peers need roadmaps and information, and their included classmates can provide them.

Regular education peers are more helpful and more understanding when they know what the heck is going on with a classmate. After I spoke about social challenges in my son's fourth grade class, his peers not only started coming up with helpful solutions that the staff hadn't thought of, but they asked better questions about things they needed to know. Their parents showed up afterward to learn more about the "workshop" that held their child's interest and developed more understanding of social challenges.

My presentation was effective not because I am a wonderful speaker, but because I had information that classmates wanted, and I shared it in a very practical way. All parents of special needs kids have this information, can share this information with their children's classmates. The object is to demystify and share practical strategies which allow peers and classmates to help themselves, and which end up helping our kids.

On a social level, it's the other students who have to deal with our kids 99% of the time, not the staff. We tell siblings what's going on, why not the regular education classmates? I think they deserve that much and can handle it. This is nothing like pointing out who does and doesn't have challenges in a particular classroom -- it is just about understanding and learning to cope with something that they are going to see during each year of school.

And that's what I told my son's classmates: "There are certain learning challenges on the rise and you will deal with this in your families, in class, and in the community." As I wrote, kids know who has social challenges -- no one needs to use names or point fingers. I found that the two kids in the class who were on the autism spectrum welcomed a discussion, and ended up sharing out loud what life is like for them. The regular education peers were absolutely glued to their seats, listening and learning. They got it, and at a deep level.

After the workshop one regular education fourth grader said, "I really don't know what this autism thing is (and I never used the word 'autism'!), but I just know that if it didn't exist, there is a lot I would not have in my life." This was a kid who had two friends on the autism spectrum who could deal with his "ADHD-ish" challenges without teasing him or making him feel weird. Lovely. Again, everyone has "differences" in a classroom. One of the kids with autism wrote me a letter saying, "Thank you for telling people that it's okay to tell me what I should do -- I am so scared when people just yell at me."

So, if you have a child with autism who is included in a regular education classroom, think about going into your child's class and sharing some specific yet age appropriate information, especially if you plan on having your child stay in that school for several years. An added benefit is that if aides or teachers are present during your talk, they may learn more about the realities of children with autism and social challenges than they would at a teacher in-service training, and they can also feel freer to ask questions about challenges "on behalf of the children."

Tuesday, June 22, 2010

Thinking Person's Guide to Autism no longer supports the conclusions behind the original version of this post, and in fact opposes efforts to deny autistic people communication options based on outdated and insufficient evidence. We will be posting a full statement on our current position shortly.

Monday, June 21, 2010

It's time for us to start working on a cover for our book. We've looked through our own photographs, and we may still have one we like, but we thought we'd open up the possibility of finding something great from our readers.

We are looking for a photograph, or image (drawn, painted etc.) of a path. We're hoping to find something that resembles the image Jean Winegardnerconjures in this essay.

some quotes from the essay:

"It is made up of dirt and rocks and it winds through and up a mountain pass."

"Some days, when we trip and fall, we see a beautiful flower under a rock that we wouldn't have seen had we not stumbled."

"Sometimes the path is dark and scary. And sometimes its beauty takes our breath away."

I’m sure the person who said hindsight is 20/20 didn’t have a child with autism. (Actually, I’m sure he or she didn’t have a child of any kind.) You’re never finished being a parent: as the Jason Robards character said in the movie Parenthood, “you never get to spike the ball and do your touchdown dance.” I have no idea if some of the things I’ve done will end up having helped or hindered my attempts to attain that Holy Grail of Parenthood: happy, healthy children.

Of course, this has nothing to do with autism, and everything to do with just being a parent, but there are challenges (and joys!) specific to parenting a child with autism, hence the birth of this group and this website.

Shannon, one of The Thinking Guide to Autism's founders, asked me to put together a list of things I wish I’d known when my son was first diagnosed. I have followed this request to the letter; what follows reflects my personal experiences and observations, and -- more often -- my own mistakes. My list includes both the emotional and the practical advice I received, and some I wish I’d received.

All the usual caveats apply: Your-Milage-May-Vary, n=1, etc. I’m sure other parents of children with autism have many more tidbits to add, and others will disagree with some of the items on offer here. I plead guilty to any sins of omission, commission or offence; these are mine alone and not attributable to the wise and good ladies and gentlemen associated with The Thinking Person’s Guide to Autism.

What Now? Ten Tips for Families with a New Autism Diagnosis

1. Take a few days (at least) before making any important decisions.

The first thing you need to deal with is how you feel. Even if you think you’re prepared for the diagnosis, you will have lots of emotions to process, and some of them may surprise you. I know I was blindsided by grief I never thought I’d feel -- we’d known for years before the “official” diagnosis that our son was autistic -- compounded by guilt for feeling it. There were a number of other emotions, too, some expected, some not, and this roiling sea of feeling sapped my reason for a short while. My rational brain knew this was normal, but that didn’t obviate the need to let myself just float without resistance on that sea for a bit before I could start actively navigating.

2. Try to plan some alone-time with your partner (if you have one) for a week or two after diagnosis.

If you’re the talky type, you’ll want to talk about your feelings. If not, you will have some practical issues to discuss (see items below) -- either way, it’s good if you can do it without the usual distractions, and without your child listening in to your discussions.

3. Decide who you’re going to tell.

When my husband and I first realized our son had “issues,” and with the dawning realization that these “issues” were most likely related to autism, my husband felt strongly that we should tell nobody that didn’t absolutely have to know. I felt otherwise, so we hashed it out and came to an agreement. It was important because if either of us had simply assumed how the other felt, it might have fostered resentments (as assumptions often do) and we would have missed an opportunity to understand how each of us felt about our son’s autism. My husband’s feelings have changed over time, but I am glad I respected them at a time when he was dealing with his own emotions surrounding our son’s diagnosis.

4. Don’t focus (too much) on the future.

No parent, whether of an autistic or typically developing child, can help worrying about the future. It’s especially easy to let these worries -- will my son live independently? will my daughter ever speak? -- niggle at the corners of your psyche and are especially persistent in the weeks just after diagnosis. Let those worries out to play, but learn to pack them away most of the time, or you’ll have trouble focusing on the short-term goals that may actually impact the future.

Just as importantly, focusing too much on the future can prevent you from enjoying who your child is today, and from celebrating her achievements. I think we all fall victim to this on occasion, but my observation is that those who are most concerned most often with “big picture” goals -- “curing” the child’s autism for example -- travel the hardest road.

5. Remember that your child is a child, not a project.

It sounds glib, I know, but it’s a mistake I’ve made again and again. It’s so easy for me to get caught up in the checklist -- the next appointment, the next goal, the next letter to be written, the next battle to be fought -- I sometimes forget that both my kids need me to be Just Mom as well as Warrior/CEO Mom.

Moreover, there are aspects of my son’s autism that I sometimes enjoy because they are uniquely him -- his habit of relating everything back to his obsession with boats and cephalopods, for example. While I do want to help him learn to ameliorate aspects of his behavior that cause problems for him, I have to be careful to remember that some of those things are not just “problems to be solved” -- they are part and parcel of who he is. The next task, the next goal, will always be there, but his childhood will not, and I don’t want to miss it.

6. Get a few binders and a three-ring hole-punch, and decide on a single, accessible place to keep them.

You probably have a lot of paperwork related to your child already. There will be more -- much more -- and you will need to refer to it all at one time or another.

I started off keeping my son’s records in separate hanging folders -- one each for school, for medical issues, for evaluations, etc. -- and it ended up a big, unruly mess because all those things were interrelated and I frequently needed to refer to something from each folder in the course of one task or meeting.

Save yourself time and hassle by keeping it all organized in one place from the very beginning. Binders are great because they are portable -- you can bring them to meetings, and they’re easy to grab in case of emergency (we live in earthquake country, so I think A LOT about portability.)

7. Keep a record of every interaction you have with schools, therapists, doctors, etc. regarding your child, even if it’s just a casual discussion in a hallway. Make copies of every questionnaire you fill out.

Yes, it seems like overkill, but together these things will give you a more complete picture of your child’s progress than a simple collection of official reports and test results. In our house, autism is a constant tide of leaps forward and steps backward, and sometimes even a casual comment by a teacher, for example, can help pinpoint the genesis of a problem or the catalyst for a burst of achievement.

8. Get familiar with laws that affect individuals with disabilities, especially those dealing with special education.

One of the biggest challenges for every single family I know that has a member with autism is getting necessary services. I can almost guarantee that this will take up a disproportionate amount of your time and worry. Knowing what services your child is entitled to receive is up to you -- nobody is likely to offer them unless you ask, and unfortunately, you may need to fight for them.

My husband is a federal attorney, and even he was at sea regarding this at first. In the U.S., I have found the Wrightslaw website -- www.wrightslaw.com -- and their books very helpful.

9. Find a local support or advocacy group.

Even if you don’t make friends through the group (I didn’t), they are a good source of information on local resources -- schools, camps, and professionals like pediatricians, dentists, barbers--who are especially good with autistic kids.

One caveat: support groups -- especially the online type -- are often full of discussions of the latest miracle autism “treatments” and “cures” (scare-quotes intentional). As tempting as it may seem, don’t get sucked in by these; the “treatments” will cost you time and money, and may even be harmful, and getting involved in discussions about them will only waste your time.

In the beginning, you may feel guilty if you don’t pursue every possible lead in hopes of helping your child, but try to let it go. There are too many for you to try them all, and the vast majority are useless at best. If you later decide you want to pursue any of them, they will still be there, and you’ll have a better sense of what’s likely be helpful for your child.

10. Meet with a financial planner -- preferably one with knowledge of disability planning.

This is one area where Item #4 doesn’t apply. You need to make a financial plan for the near and possibly the distant future. This is a good idea for every family, but having a child with autism can add extra financial stress, and unless you are yourself a financial wizard you will need professional guidance.

Even if you take my advice and stay away from DAN! doctors and others offering unproven therapies, having a child with autism can be expensive. Evaluations, therapies, special equipment, respite care, medications -- chances are you’ll need to pay out-of-pocket for something now or in the next few years.

You also need figure your child’s unique needs into your basic estate planning -- you may need to consider carrying extra disability or life insurance for yourself and your partner. You definitely need to think carefully about who may be able to care for your child in the event of your death -- it might not be the same person/people you would chose to care for a typically developing child.

Friday, June 18, 2010

I hang back, following but not too closely, watching my son and his two best friends through the viewfinder, my face hidden behind the awkwardness of a zoom lens. As I watch the boys cross the red wood bridge, I snap half a dozen photos. And then again, as they settle in on the dock, taking turns casting, tossing pieces of bread to a giant turtle bobbing on the lake’s surface.

There is little to show here for my son’s differences. He is simply one of the guys, enjoying a bit of freedom and fun on a weekend in the Catskills. I scan the lake and the mountains beyond, the grey clouds sitting low in the sky, and think about how remarkable the scene really is -- how its very ordinariness is something to celebrate.

I take a few more pictures, then leave the boys to their adventures. Later, they will head for the pool, to toss themselves again and again down the twisty waterslide. They will walk to the barn and feed the rabbits and pigs, play baseball, climb the playground equipment and sit side by side in the dining room, buttering their own bread, pouring their own milk, weaving themselves in and out of the tangled knot of parents and grandparents, friends and family surrounding them on this late spring weekend.

When I look at the shots taken that rainy morning by the lake, three boys and a fishing pole, I am struck by their body language, the ease and comfort of a hand on an arm, two heads dipped to the side to share a quiet word, three young boys standing shoulder to shoulder, their bodies overlapping in a way that is at once familiar and relaxed.

There was a time when I could not imagine the beauty of it. Could not picture my son walking away from me to follow his friends across a green meadow, chasing the wind and the rain and a giant turtle by the side of the lake. For the boy who missed nearly all his developmental milestones, didn’t walk until he was 16 months old, and could not tolerate noise or chaos of any kind, his fortitude is nothing short of a wonder to me. When I think about where we started, I am overwhelmed by how far we’ve come.

There was a point when I thought it would never be okay. When the tantrums and tears and the sleepless nights took away our smiles and our joy. At three years old, my son could not walk down a flight of stairs or attend preschool without a one-on-one aide. He wasn’t speaking in a coherent or understandable way and he spent his days frustrated and angry, lashing out at the world around him. The sound of a hair dryer or car alarm crippled him, a light hand on his shoulder led to screams of pain. He was off the charts sensory sensitive, unable to complete the simplest art project or play with other children. He lined up his toys and cried if anyone else moved them. We were lost and scared, and yes, I was completely in denial.

But he’s eight now. And I’ve turned my attention away from the past. I no longer fret about how or why things turned out this way. My son has autism. And it is what it is. I can’t go back and will a different outcome. I can’t conjure him a brain that makes the right connections 100 percent of the time any more than I can fly to the moon. So I’ve learned to more or less take it in stride, to trust my instincts and my judgment, to parent my son the only way I know how.

I’ve come to think of his actual diagnosis as nothing more than a formality. Like shaking hands on a deal that was decided long ago. I didn’t want to see it at first, but I know now it was always there. I wanted to believe well-meaning family and friends; the pediatrician who said my son was “a bit behind the curve, but still making progress”. I pushed my concerns aside, couched my worries. And told myself that all kids have mega-meltdowns.

By the time we had a workable diagnosis, my son was nearly four years old. We started then down the tried and true path of speech therapy, occupational therapy, physical therapy and social skills training. My son balanced Cheerios on his tongue and practiced waiting his turn. He did exercises to build muscle tone and learned how to hold a crayon. It was non-invasive, behaviorally driven and somehow, in ways I don’t even fully understand, exactly what he needed.

There was pressure early on to pursue other therapies. Things both proven and unproven. Family members would pull me aside to ask about his diet; whether or not he seemed "allergic" to wheat or milk. Many swore that adding this or that supplement could curb his behavior. Others talked about discipline, no doubt whispering to each other that my husband and I were too soft on our son. But none of these suggested remedies seemed wholly directed at what ailed him. ABA therapy felt too rigid for our family, the GFCF diet too unnecessary, and the skeptic in me steered clear of anything too risky or too expensive.

I started to do my own research. I read Dr. Stanley Greenspan’s book The Child with Special Needs and The Sensory Sensitive Child by Karen Smith and Karen Gouze. I understood things in a new way. I sought the counsel of my son’s OT, and worked with her to cobble together a little bit of this and a little bit of that, a behavioral approach that could help us remediate in a positive way. I began to see things through his eyes, to change my response to his behaviors and to follow his lead. I learned to trust my son and to listen to what his behavior was telling me. We slowed our family way down. And then when it felt like he could handle more, we ramped things up—looking for ways to raise the bar, to help him grow, stretch and narrow the developmental gaps. We inched our way forward through his toddler and kindergarten years, working in tandem with our school district and trusting in the experience of his therapists and teachers.

But it is never easy. For every two steps of progress, there are three steps of regression. The bulk of my son’s challenges fall under the larger umbrella of processing issues, self-regulation and motor planning. His standardized evaluation scores are just beginning to climb out of the single digits. When you look at who he is on paper, you very nearly can't believe the boy before your eyes.

Today my son is a quirky, exasperating, delightful, funny, interesting, charming, friendly, emotional, sensitive, awkward and sometimes extremely frustrated third grader with a diagnosis of PDD-NOS and sensory processing disorder. He still struggles with his ability to handle the unexpected, to cope with disappointment, and I continue to remind myself that delays are not permanent stops. We apply band-aids and tourniquets as needed -- continuing to tweak our behavioral strategies to meet the challenges of grade school and beyond.

When he wasn't reading, we found him a tutor and consulted a developmental optometrist. Because he couldn't tolerate the pace or competitiveness of our community-based sport programs, we enrolled him in a league for kids with special needs. And as he struggled to overcome emotional growing pains, we added a social worker to the mix.

What all this has taught me is that -- for us -- there is no ONE thing. No one strategy or approach or end-all plan to fix things. It’s a sliding scale. More of this, less of that and back again. It is an evolution in progress. One my son is even beginning to have a say in as he learns to accept and deal with the hand he’s been dealt.

There are days when I wonder -- worry -- about the future. Will he graduate high school? Go to college? Be able to live on his own? But I've set aside previous notions of success and found I'm happiest when I live in the moment, appreciating the forward motion, the hills and valleys, of my son's life.

There is no substitute for the lessons he learns when he is out there, taking part in his world. And I am grateful for the small group of friends who stand by him through thick and thin.

On our last day in the Catskills, I ask the boys to pose for a final picture. My son's two friends -- brothers -- stand to his sides, their arms draped over his shoulders, his slung low behind their backs. The boys tilt their heads to the middle and the three of them look up and grin -- silly, toothy grins. I see them then, through the years -- young boys and the men they will become -- standing on the threshold of something.

I search my son's eyes as he looks into the camera. He is relaxed, completely at ease. Happy. There was a time when I could not imagine him in this moment.

Thursday, June 17, 2010

When I attended the National Autism Society's first International Autism Conference in London in 2005, I heard Professor David Amaral tell the story of a young man with Asperger Syndrome who visited the MIND Institute at UC Davis. The young man was asked what he would do if they could develop a pill to cure autism. He thought for a while before replying that he would take half the pill.

I think this illustrates a real difference within the autism community. There are many who pathologize autism as a disorder that afflicts an otherwise healthy individual. If you hold this idea you naturally look to understand the causes of autism in order to find that "autism pill."

The idea of neurodiversity was developed by autistic people in opposition to the pathologizing model. According to them autistic people are not disordered. They have a different sort of order. Their brains are differently wired. They think differently. They do not want to be cured. They want to be understood.

This is not to deny that autistic people often face real difficulties. That is why the young man at the MIND Institute told David Amaral that he would take half the pill, but not the whole pill.

What does Neurodiversity mean for parents?

The cure mentality places great pressure on parents to rush into interventions. Then there is the guilt. Was there something I did or didn’t do that caused the autism in my child? Can I put it right? How can I not put it right? Instead of raising your child you can spend all your time trying to fix him. The story of Liz, Lady Astor1, and her approach to her daughter Olivia's autism illustrates this.

Olivia was four when Liz finally faced up to the diagnosis. She was wracked with guilt that, having given birth to Olivia at the age of 42, she was somehow responsible for her child's problems, either directly or as a result of a pre-natal diagnostic test (amniocentesis) that went wrong.

Lady Astor's way of dealing with this lonely burden was to take action. "I wanted to rip the autism out of Olivia with my bare hands," she says. In the years that followed, she whirled her daughter from one therapist to another, trying everything from cranial osteopathy and "brushing" her nerve endings, to Portage - a method of teaching everything in tiny steps.

[…]

"Every practitioner is convinced that his or her treatment is the one and you feel compelled to try everything to find the one that will open up your child. I have seen children who have made remarkable improvements, but I would never say they have been cured or recovered.”

[…]

Having reached a state of mind where, even if she could, she would not change Olivia, she tries to concentrate on the good qualities that come with autism -- honesty, uncompetitiveness, absence of spite.

Embracing neurodiversity allows you to stop looking for a cure because there isn't one. I agree with the eight autism organizations that signed an open letter to CBS and Dr. Phil McGraw (27 January 2006) stating that:

Most of the enlightened world knows that autism is at its root, genetic, and therefore by definition it is not something that can be considered "curable" or a "disease."

Giving up on a cure is not the same as giving up on your child. In fact it can help you to take a more balanced approach. It is easier to reflect on your child’s strengths as well as their difficulties and take up Lorna Wing’s advice that:

an autistic child can only be helped if a serious attempt is made to see the world from his point of view.

Sometimes our biggest problem lies with other people. One mother gave me permission to quote something she wrote in an email about autism and acceptance:

I think that it's a bit insulting sometimes for people, especially family and friends, to try to give me information about how to make my son be a "bit less autistic'." It makes me think they want a short-cut to make him more acceptable. I'd prefer it if they tried to connect with him and enjoy him as he is. Then they'd really be able to help him to progress.

This is the essence of neurodiversity. First accept the difference. Then find ways to work together. And it is not all about problems either. We all had a favourite subject at school that we were good at and something else we really struggled with. Imagine being told that you had to drop your best subject and have double lessons in your worst subject.

That is not so far from the experience of lots of autistic children whose interests and talents are sidelined while we concentrate on their difficulties. This can send all the wrong messages to our kids. They learn about their limitations but rarely get the chance to achieve. So they put up barriers to protect what is left of their self-esteem. You try and offer constructive criticism. They take it as a mortal insult.

If we accept somebody and work with their strengths we can help them to find ways of dealing with their problems that work for them. I spent a lot of time trying to solve my son’s problems and making choices for him. The turning point came when Dave, a clinical psychologist asked him to think about what he wanted. Prior to this my son had always been encouraged to meet other people’s demands and expectations. Dave was the first person to give my son explicit permission to put his desires before our expectations.

When does Neurodiversity give way to disability?

It is a common mistake to believe that neurodiversity is only for people who are "high-functioning" or are "mildly autistic" or any other synonym for "not my child." The argument goes that neurodiversity is all right for you. You can talk. You can write. You are intelligent. My kid is non-verbal, self-injures and needs constant care.

There is a whole set of problems that come with being "high-functioning." People expect you to be normal or at least to act normal. So you expend a lot of mental energy pretending to be "normall which leaves you wide open to stress-related problems like depression, obsessive compulsive disorder, and social anxiety disorder. You may be paralyzed by panic attacks or have uncontrollable bouts of anger. This can get you in trouble with the law or trapped in the psychiatric system. Being high functioning is not a soft option.

Does the demand for tolerance and understanding mean ignoring children in distress, doing nothing about autism, denying the need for scientific research? Of course not. We support the need for decent peer-reviewed research into the problems associated with autism. It is by no means clear what constitutes the core features that are fundamental to autism, and what are secondary factors. We just do not see any justification for seeing all a child's problems as being down to its autism and imagining that there is a magic bullet to solve them all.

Who will speak for my child?

This is a real concern, especially for parents of children who are highly dependent on others. We are all mortal and when we die, who will speak for our children then? Neurodiversity is a way of thinking about human difference that has the potential to change the world for autistic people in ways that are comparable to the impact of the liberation movements for women, or people who are black or gay. When society speaks for my child, then I can die happy.

The National Autistic Society (NAS) in the UK recently changed its constitution. We are no longer a parent-led organization. Previously there had to be a majority of parents elected to our National Council. Now there has to be a majority of family members -- parents, siblings and people with autism. Many parents of severely autistic children were worried that this dilution of control would weaken their voice as the only effective advocates for their children. Some were worried that high-functioning autistics would take over the NAS and their children would be forgotten.

I pointed out at the NAS's Annual General Meeting that in my experience autistic people who were willing and able to campaign and hold office were concerned for the rights of all autistic people. They take Neurodiversity seriously and value everyone on the autistic spectrum. The parents of children with Asperger Syndrome were far more likely to push the NAS down the path of providing mainstream support for their children at the expense of those who needed more expensive care and protection.

Neurodiversity, like freedom, is indivisible. And its benefits are being seen within the NAS as the professionals in our care homes and schools strive to create mechanisms whereby all autistic people within our structures are able to self-advocate, make choices and exercise personal autonomy.

What does Neurodiversity mean for professionals?

By listening to autistic adults I have changed my practise in relation to the autistic children with severe learning difficulties in the special school where I teach. I no longer expect eye contact. Instead of demanding, "Look at me when I am talking to you!" I ask, "Are you listening?" When I speak to a child I give them extra time to process my words and formulate a response. If someone is acting strangely, instead of stepping in to prevent the behaviour I ask myself, "Why is he doing that?"

OK, I am only human. sometimes I have bad days. I make mistakes. I mess up. So do the kids in my class. They make allowances for me. I make allowances for them. Some people do not get it. They think I am "letting them get away with it." Yes, like they are being autistic on purpose.

The most important thing a professional can do is to help a person understand and accept that they are autistic and then decide what they are going to do about it. A lot of autistic people spend a lot of time trying to change themselves to fit in with the world as it is. It is important for autistic people to learn how to get by in this world. But they will not do that if we try to manage the way they think. I often say that we should not teach autistic people to manage their behaviour. we should teach them to manage ours. And between us we may make the world a bit more manageable for all of us.

What does Neurodiversity mean for autistic people?

I am a parent and a professional. I am not autistic and therefore would not presume to speak for autistic people. There are many who can speak for themselves. You can find a really good sample at the Autism Hub, a place where autistic people, parents and professionals meet with no distinction and anyone is welcome providing you share our respect for the condition of being autistic. We seek no fundamental alteration to this state of being but we do seek to intervene sometimes should the situation require it. And when we do intervene we should remember the words of a very wise person with autism, my son:

My autism is not a problem. It creates problems. But it is not going to go away

I want help with my problems not with who I am.

I want you to offer support but do not try and change me into someone else.

----

[1] The Honourable Elizabeth Constance Mackintosh married John Astor, 3rd Baron Astor of Hever, in 1990. Their younger child, Olivia, was born in 1992 and will be 18 in August, 2010. Lady Astor published her memoir, Loving Olivia in 2006. In May, 2006, the Times published an interview with Liz, Lady Astor, entitled 'I wanted to rip the autism out of her', from which these quotations are drawn.

Wednesday, June 16, 2010

Its now been nearly seven years since Megan, my eldest daughter, was diagnosed with both autism and a comorbid "severe learning difficulty" (known in the US as mental retardation -- it means her measurable IQ is less than 70). Those six years have been a personal journey for me as I first came to terms with Megan’s autism, got lightly involved in the 'cure autism at all costs' movement and then as I saw the results (or non results) of this movement, genuinely came to terms with the fact Megan was autistic and got involved in the neurodiversity movement.

In those days, 2003, there was very little online regarding autism. No blogs existed that I could find, very few forums and little to no email lists. In order to get your "Google PhD" in those days one had to dig very hard indeed. And boy did I dig. Every word I didn’t understand was written down for a further Search session, every name carefully Googled with every permutation of keywords I could think of. Early names I came across in those days may tell you something of the type of information. Lenny Schafer, Mary Megson, Andy Cutler, Amy Holmes. These names and their associated web pages coloured my thinking about autism and my perception of what it was. I can remember talking excitedly with a friend about this new autism treatment that I'd read about called "chelation" and how I was going to do my damndest to get Meg involved. However, that search proved fruitless in the UK. In 2003 I'm not sure any UK chelationists existed. Lucky Meg.

But what really caught my eye was the GFCF diet. The way the information was written about on the web, all I had to do was get Meg on this diet and she would be cured of her autism. I bought a book from Amazon and joined a web forum recommended by the book. With great expectations, we began the diet.

Whilst Meg was on the diet we learnt a few things about our daughter. We learnt that she liked bread and really objected to not having it. We learnt that in biomed circles this was known as a form of addiction and our daughter was essentially going "cold turkey." We learnt that Meg was far cleverer than her official IQ of 70 allowed, as many times she managed to sneak foods she wasn't supposed to be having. We learnt the power of positive thought over the power of truth as we re-began the diet every time she did this. We learnt how to re-organise our kitchen and we learnt that even re-organisation wasn't enough and so bought locks for our fridge and cupboards.

In short, what we were learning was one of the first basic truths about any biomed based approach: it takes over your life.

And even now, in these early days I was beginning to question. Here’s a quote from a blog post of mine from June 2003.

“...I wonder what scientific basis there is for these claims and anyway the trends in what is acceptable in relation to food alter so quickly it’s impossible for u to be sure. So what we intend to do is take it step by step. We’ll start by removing Dairy foods from Megan’s diet and see how we go -- probably making Gluten the next on our "hit list.1"

And so on we went. We carried on excluding certain foods from Meg's diet -- more successfully now we had locks on the fridge and cupboards! -- and she carried on making her displeasure known. We waited and we waited and we waited for some unknown, unspecified point when we would see that her autism was receding.

Nothing happened.

Dr James Laidler, also a former GFCF advocate, sums up how we were beginning to feel:

"My younger son was still on a gluten- and casein-free diet, which we both swore had been a significant factor in his improvement. We had lugged at least 40 pounds of special food on the plane with us. In an unwatched moment, he snatched a waffle and ate it. We watched with horror and awaited the dramatic deterioration of his condition that the "experts" told us would inevitably occur. The results were astounding -- absolutely nothing happened. I began to suspect that I had been very foolish.2"

We had done exactly as we were told. We had given the GFCF diet the time it was recommended we should do for it to begin to work and nothing had happened. Nothing at all.

Like Jim Laidler before me, after I felt foolish, I began to get angry. Angry at myself (as well as guilty as to what I had insisted we put Meg through), angry at some of the parents on the biomed forum I attended and above all, angry at those who were not just "researching" this treatment but making a hell of a lot of money from it.

It was now I began to notice that there were other things that could accompany the GFCF diet -- nutritional supplements, mega doses of vitamins, various detox methods, and as 2003 became 2004 and we moved into the summer of that year my own anger became a determination. A determination that I -- and through me Megan -- would not get caught out again -- "won't get fooled again" as Roger Daltrey famously sings.

I started reading scientific abstracts on autism and the vaccine connection and a connection that had once seemed not just possible but likely melted away in the same way a mirage does -- as you get closer to the truth, the lie fades away.

If the science was highly technical then I would write to the authors and ask for an explanation. Nine times out of ten the authors would be more than happy to talk about their work and would walk me through what they had done and how they had done it. And of course above all -- what it showed.

Online I became familiar with a group of autistic adults and began to have my assumptions about the overriding necessity for "cure at al costs" challenged. I was highly impressed with people like Jim Sinclair, Frank Klein, Clay Adams, Amanda Baggs and of course the now sadly silent Autism Diva3.

This set of circumstances led to what I (rather pompously) think of as my autism awakening. I was being exposed to proper science in terms of causation and treatment, and at the same time, was being exposed to a new way (to me) of thinking about autism.

This new way of thinking about autism included the really rather radical idea that just maybe autistic people might not choose to be "cured" of their autism (assuming one day a cure ever existed). This put them into direct conflict with those who chose a pure biomed way of treating autism, designed as it was -- however badly -- to cure autism.

One of the aspects of the biomed movement that I had once shown was a burning desire to rid my daughter of any aspect of her autism. To the Biomed movement, any approach that is:

a) Not grounded in biomed principles and
b) Not set up with the end resulting of removing all traces of autism from a person

was simply invalid and should not only be mistrusted but actively attacked with what Jim Laidler describes as:

"Utter nonsense treated like scientific data,...theories made out of thin air and unrelated facts.4"

And lo and behold when I tried to post on a biomed group citing science regarding the autism/vaccine non-connection I was attacked in what was -- to me at the time -- a surprising and intense amount of vitriol. I was accused of being insane and of "trolling" the group (trolling is an activity that sees an individual trying to annoy the regular participants for no reason other than the chance to see them annoyed5). Needless to say I wasn't trolling, I was (I thought) providing the group with much needed realistic information.

I soon discovered that there were a defining set of properties that characterise a biomed follower. I discovered this by taking my evolving ideas about autism and my discussions with scientists onto my blog:

An overriding desire to "cure" their autistic child at all costs

An overriding belief that vaccines cause autism in some (any) way

A willingness to listen and act on the advice of other parents only

An unwillingness to want to hear the thoughts of autistic adults

A deep seated mistrust -- almost a hatred -- of mainstream science

The need to see everything that doesn't agree that vaccines cause autism in terms of an Illuminati-type organisation

The need to see those that directly disagree with them in terms of persecution

The members venerate the leaders of the movement and attack anyone who questions them

Dissent, questioning type behaviours are frowned upon

In a lot of ways biomed groups display cult-like behaviours6 and it was somewhat surprising to myself to think that I had been -- for however short a period of time -- a member of something that could be described as cult-like.

But now I was coming up full force against these people. Wherever one went, in the comments section of a news story, on a web forum -- even in the comments section of my own blog, you were coming up against someone -- usually several someones! – who were committed to the biomed movement and all that that entails. These discussions usually generated a lot more heat than light and I'm sure I did my share of biting back (in fact I know I did) but I had become a firm proponent of science and the idea that autistic people had rights and that that one of those rights was their right to be autistic7, and I saw it as a duty to my friends and my family to tackle misinformation wherever I found it.

My blog has evolved over the years to fit this view of the world and now tackles science and pseudo-science on a regular basis. I believe that a purely biomed -- and particularly the more extreme biomed such as chelation, etc. -- treatment regime is not only grounded in bad science, it is dangerous. People have died and been injured. It is past time we got back to the idea that well-designed science can help expand our knowledge of autism.

Monday, June 14, 2010

I feel that when I got my son Jack's autism diagnosis, it was as if I had been given directions to a trail head that started us down a path. The path was different than the one I'd planned on and this path was rockier than the one I left behind, but still, it was a path. Walking along this autism path was better than milling around aimlessly in a meadow, unable to find a trail head of any sort.

When I think of Jack's autism and where it takes us, I can actually see this path in my mind. It is made up of dirt and rocks and it winds through and up a mountain pass. I'm walking it with Jack, and my other children walk on either side of me. Sometimes the rocks in our path cause only Jack to stumble, but sometimes they are spread out so all of us trip and struggle.

Here's the thing about this difficult autism path though: It's beautiful. There are trees and ponds to the side, and every once in a while we see a deer or a squirrel. Yes, the terrain is bumpy, but the setting is gorgeous. This is how I see my life with Jack. Parenting a special needs child brings so much love, joy, learning, and amazement. Some days, when we trip and fall, we see a beautiful flower under a rock that we wouldn't have seen had we not stumbled.

Often times our children with autism forge straight ahead through the hardest section of the trail, but sometimes they notice that there is an easier way around. Every time they take that easier way, every time they learn that they should look for the possibility of an easier way, the sky seems to get a little brighter.

We're not alone on our path either. There are special needs families strewn all over this trail, walking with us. Sometimes we hold hands as we struggle up a steep incline and sometimes we catch each other as we slide down a scree-littered down-slope.

No matter where our paths are taking us—and they stretch all over the mountain—we all started from the same trail head, more or less. We all saw that signpost with the words, "Diagnosis: Autism" on it.

Some of us set off with purpose in our hearts and our heads held high. Some of us feared the heavy trees and that initial almost-vertical climb. Some of us tried to turn around to find a different trail. Many of us had hope. And we needed it too, because that first couple of miles? They are a bitch. The terrain is unpleasant and the overhanging trees block the view. There is so much to learn about how to climb and we often forget to look for the bright spots hidden among the boulders.

But we keep going because someone a little bit ahead holds out a hand, or we see a beautiful rock that a previous passer by dropped for us on the ground. We keep going, because our child keeps going, and he needs us to keep up. He needs us to remember that even when he is struggling up that path on unsteady legs, he is still the same child who days ago was frolicking in the meadow before someone said "autism" and pointed him toward this trail.

There are people who are much farther ahead of us on this path. Through the special needs parenting grapevine, word comes back that there is a really steep hike coming up. The word warns us to work hard and keep trying but don't despair, because there is a lovely flat section after you reach the top, and oh my God, you won't believe the view from up there.

These paths wind all over the mountain of autism, intersecting, diverging, and running parallel to each other. There are times when I am on my path, picking my way around trees when I can see my special needs friends on their paths below and above me. Some of them are struggling, some of them are running, and, look, that guy there is sitting down nursing a bruised knee.

But we all get up and we keep walking.

Sometimes the path is dark and scary. And sometimes its beauty takes our breath away. Sometimes we gaze at the path of neurotypicality on the valley floor and wish for those easy slopes and the way all of those paths run close together, providing easy company. There are some beautiful plants and geographic formations down there, that's for sure. We forget that there are hazards down there as well, that they are merely different from our own.

There are days that we don't envy those valley-floor paths, however. Those days we realize that those trails don't wind around high-altitude lakes, stunning in their beauty. Those paths don't force their walkers to fight through a bramble of thorns, which means their travelers don't get to feel the surge of pride and victory when they emerge back into the sunlight. We don't get to experience the same beauty as those walking on the valley floor, but our scenery is gorgeous in its own right.

Everyone's path is hard. Everyone has to struggle up and down the trail on which we have embarked. We struggle over the uneven ground and hope that around the bend there is a nice flat section or a tree stump, upon which we can take a rest and enjoy being with our fellow travelers.

But after we sit, after we rest, we stand up and we keep walking. We continue to find ways to help our kids avoid the most difficult pitfalls and we keep on in our search for that small, beautiful flower or the overwhelming gorgeous view.

We're tired, but we keep going, because we get to be with our children and they make the walk oh so worthwhile.